Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hi everyone
Today is day 100 post transplant for Tony. It's literally been a blur, July 10th, transplant day seems like forever ago! We are so grateful for all of the prayers and advise we've received. We have had such a long road (relapsing at 13 months w favorable inversion 16) but know that this is still just the beginning.
He has done well so far, but he definitely has ups and downs, good and bad days. He was tapered off immunosuppressive drugs early at day 52, and had his port removed then too, as had no need for it since discharge.
He really felt well early on, but as times gone by he's actually started to feel a little more crummy. It's so hard to see him this way as I try to stay positive but I get so worried too.
They (Heme/Onc) think the rash was probably gvhd but since pathology didn't confirm- guess we will never know. It's totally under control and very mild but nonetheless still potentially gvh
His latest bone marrow results are good, no leukemia cells detected, most importantly, & still full donor. U of C doesn't say "100% donor", which bothers me bc I see many people post that they are "100%" but guidelines state anything over 95% is "full donor" and they go off of bone marrow chimerism tests, not peripheral blood. Any feedback or input on this appreciated.
The haven't decided if tony will qualify now for the pDLI bc of the rash, they think if he already has gvhd, giving a DLI will make it worse. In my opinion, I want him to get it, bc I NEVER want to go down this path again.
We are down to bi-monthly visits now (which is good but stresses me out bc I have a love/hate relationship w counts) and not knowing is stressful!(esp when he is not feeling great) his latest counts are
WBC 5.3
Heme 13.5
Plates 131
ANC 3800
Oh and his Lymphocytes are getting up there finally (16%), the bottom of normal range
It's been hard to keep up w a 2.5 year old thru all this and hide our pain or sorrow or exhaustion from her. But she is everything to us, and Tonys reason to fight, to live. We were planning on having another baby this fall but those plans were shot on April 10th when we got the call from his old doctor. We want nothing more than to put this behind us and start living our lives again, and move on, go on a date, plan a trip or figure a way to maybe have a baby (I'm getting older than we wanted and I have a uterus issue, that we found when I was preggers w izzy)
Keeping izzy isolated from other kids has been hard on us bc all she wants is friends - it breaks our hearts, but there's so much viral crap out there- we can't risk it. Parents take their sick kids out and about - they don't realize the ramifications it has for people like us.
So there it all is, the good & the bad, happy and the sad, but most of all, the good. I thank God every day for healing tony again and ask him to hear my prayers to continue to keep his healing hands upon him, so izzy can have her daddy.
Live u guys
Lea
Today is day 100 post transplant for Tony. It's literally been a blur, July 10th, transplant day seems like forever ago! We are so grateful for all of the prayers and advise we've received. We have had such a long road (relapsing at 13 months w favorable inversion 16) but know that this is still just the beginning.
He has done well so far, but he definitely has ups and downs, good and bad days. He was tapered off immunosuppressive drugs early at day 52, and had his port removed then too, as had no need for it since discharge.
He really felt well early on, but as times gone by he's actually started to feel a little more crummy. It's so hard to see him this way as I try to stay positive but I get so worried too.
They (Heme/Onc) think the rash was probably gvhd but since pathology didn't confirm- guess we will never know. It's totally under control and very mild but nonetheless still potentially gvh
His latest bone marrow results are good, no leukemia cells detected, most importantly, & still full donor. U of C doesn't say "100% donor", which bothers me bc I see many people post that they are "100%" but guidelines state anything over 95% is "full donor" and they go off of bone marrow chimerism tests, not peripheral blood. Any feedback or input on this appreciated.
The haven't decided if tony will qualify now for the pDLI bc of the rash, they think if he already has gvhd, giving a DLI will make it worse. In my opinion, I want him to get it, bc I NEVER want to go down this path again.
We are down to bi-monthly visits now (which is good but stresses me out bc I have a love/hate relationship w counts) and not knowing is stressful!(esp when he is not feeling great) his latest counts are
WBC 5.3
Heme 13.5
Plates 131
ANC 3800
Oh and his Lymphocytes are getting up there finally (16%), the bottom of normal range
It's been hard to keep up w a 2.5 year old thru all this and hide our pain or sorrow or exhaustion from her. But she is everything to us, and Tonys reason to fight, to live. We were planning on having another baby this fall but those plans were shot on April 10th when we got the call from his old doctor. We want nothing more than to put this behind us and start living our lives again, and move on, go on a date, plan a trip or figure a way to maybe have a baby (I'm getting older than we wanted and I have a uterus issue, that we found when I was preggers w izzy)
Keeping izzy isolated from other kids has been hard on us bc all she wants is friends - it breaks our hearts, but there's so much viral crap out there- we can't risk it. Parents take their sick kids out and about - they don't realize the ramifications it has for people like us.
So there it all is, the good & the bad, happy and the sad, but most of all, the good. I thank God every day for healing tony again and ask him to hear my prayers to continue to keep his healing hands upon him, so izzy can have her daddy.
Live u guys
Lea
I am so happy to see Tony's counts looking so good...especially after transplant! I totally understand the worries about exposure to sick children. I wipe down carts at stores before I even sit my daughter in them...and she is not even really visiting Julian right now (just because he is so vulnerable for the next few weeks). One of my friends was selling a Pack N Play online that was in good condition and would be great for the baby, but I turned it down because she has four children living in her house and I was worried about whether it could be cleaned well enough to be in Julian's hospital room. Hopefully Izzy can hang in there just a bit longer. I would imagine in the next few months, the risk of infection will be a bit smaller, and she has plenty of time to be socialized. The DLI worry is one that I have had too, even though we are not even at a point that it would even be a consideration. With cord blood, there is no option for DLIs. The good news, though, is Tony's engraftment. I think if they say anything over 95% is completely donor, I would go with it. I have read people's statements about being high 90's even years after treatment. I agree that I want to hear 100% too, but I guess we will cross that bridge when we get there. :) Julian will have two donors, which makes this whole process even more interesting...to see which cord wins. Your family has been through so much. Only good things to come! You deserve it. We pray for Tony every night. Best wishes~
Jacki
My path reports don't say 100% donor, it says no evidence of patient DNA.
That the formal limit of detection is 5%. So 95%
The same line on both my BMB chimerism and T-cell chimerism tests.
i know for me the skin stuff is transient. Sometimes derm path says GVHD and some times it comes back with as much Latin stacked in a sentence as possible with so many options of what it might be the cause of the rash. My doc has stopped doing biopsy on minor rashes if they respond to topical treatment and don't spread.
You have our prayers -- and let's all give thanks for the great news -- dave
Such a long awaited update on Tony-100 days post SCT!!!! You and Tony continue to inspire me. As you know Tony was DXd just one month before me with the same "favorable" sub-type-INV 16. His relapse rocked me not only becuase of our simular paths but also because of Tony's amazing recovery during four consolidations while I struggled with count recovery.
Tony's journey is also so important to me because I know you lost your father to the AML demon not too long ago. How much can you endure along with raising a beautiful two year old. Well obviously not only have you and Tony endured but you are and will THRIVE. Tony is a SCT warrior!!!! His path assures me that heaven forbide I relapse, I can thrive as well. You are both an inspiration!!!
In regard to Izzy's isolation, I had simular fears while I sequestered my three daughters for a year. It was worth it and I'd do it all over again. We talk about that year as a fond memory now. My girls call it the best summer ever.
I pray the God of the universe guides your med's team desisions in regard to DLI.
You are always there for me. I consider you a friend and a fellow warrior in the fight against the AML demon. We will win!!!
Blessings
Julie
Everything sounds great. Don't worry about what they call the chimerism results. His are fine. At sloan kettering, they use the percentages. Who cares. I cant remember whether Tony was a T-cell depleted. If so, it takes a long time to get the lymphcyte count up. After three years, my CD4+ count actually went down on the last sample, but is high enough to prevent any opportunistic infections. I have learned to be satisfied with good results. My hematocrit was 41 this time after generally floating in the upper 30s. Many members of our transplant teams (2013 and 2014) have gotten up above 40 quickly. It all varies with the person. My WBC count generally runs in the mid-5s. Others on this site have higher counts. It's funny, but when I was healthy, I used to have counts just like I have now, except my HCT was higher. I think each of us provides a certain environment in our bone marrows and our new cells get used to it the way our old ones did.
Izzy is going to have her daddy for a long, long time. I think you should go out on a date right now before everyone starts sneezing for the winter. I wonder when you will get the all clear to start that brother or sister for Izzy. I would imagine that it can't be too long from now. I wonder what Tony's doctor would say. Since I am 61 and my wife is 59, I really never asked that question. LOLOL.
All is good. Just keep looking forward. Don't hang on ANY lab numbers. Better off spending time on a pumpkin farm with Tony and Izzy. Much better for your health.
Cliff
I'm happy to see Tony's blood counts, they look great. Glad also to hear U of C says "full donor." Sal's doc said his chimerism results were 95%, which he says is basically the same as 100% or full donor. (I mistyped 99.5% in a message to you earlier, please disregard that.)
I'm sorry Tony's been feeling crummy. Even though Sal is doing well overall, he has his ups and downs, too. They've both gone through so much...the chemo/radiation and all the other drugs...it takes a long time to recover. When I think about it, I realize that the docs pretty much took them to the brink, infused new stem cells, and then had the nurses (and us) watch over them and slowly nurse them back to health. I know that Cliff and Lou have had their ups and downs over time, and look at them now!
At the end of the month, Sal will be 6 months post-transplant. Sal's liver function has been back to normal for several weeks now, so his doctor decided that he did not have GvHD of the liver, so his tacrolimus immunosuppressant was further reduced to .5mg once a day, just 1/3 of his original dose. He's nowhere near "normal", but he's pretty darn good considering what he's been through.
I know it's so hard for Izzy. I wish I could play with her, haha! But then again, I was down for a couple of days last week with a really bad cold and I've been worried about Sal catching it. So far, so good... I'm keeping my fingers crossed, but I'm hoping he dodged it. Sal's new immune system HAD to have been protecting him from it somewhat, so it's encouraging.
I keep thinking there must be other little children nearby of immune-compromised patients...it would be great to find them... But Izzy is a luck little girl because she has her daddy and she has you!
XOXO
Monique
Karen
I am convinced that it is harder for the caregiver than the patient especially in cases like yours. I wish I had something to offer that could help you but I have not walked your path. I can, and do, pray every day for your family. You will get there, back to a normal and healthy happy life.
I will be at day 300 this Thursday when I go back to the clinic. I am on monthly visits now, mostly because of the clinical trial that I am in. I feel great, but much like Tony and everybody, have my up and down days. My up days way out number the downs, I give all the glory to my Lord and Savior Jesus Christ.
Before you know it, you guys will be back to your normal routine and living life without all the worry.
DaveJ
Tony felt well today, I think he's really missing running and working out. His back and hop and shoulder have really been hindering him, to the point whee it hurts to walk, and it really getting him down. It's old athletic injury stuff but really affecting him now. It's really messing with him mentally to not feel great physically, but he's so hard on himself, needs to rest more! He works (from home still) 8/9 am till 6/7 pm with breaks of course but it's too much I think. He has worked so hard to get to his role in his company, and really feels the need to stay connected and work as hard as he can from home. He's still not cleared to return to the office, docs are playing it safe. Tony oversees operations for more than 300 physical therapy clinics and has thousands of employees under him. there would be lots of face to face, close contact meetings if he returned. Izzy and I don't mind at all!
But I know he feels disconnected with his team right now and that's hard in him too. It's been a long road!
He also is STILL losing weight. Went into transplant weighing about 175lbs, (he's normally 190-95 pre diagnosis & pretty muscular normally. He was back up to about 185 before relapse.)Tonight he weighed in at 161! He's been down a lb. per week, but this is 4 lbs from last Wed. Now were starting to worry. I cook him 4-5 meals per day, all healthy, and have cut out any high fat, & most dairy (he stopped even his beloved nightly pint of ice cream) bc it upsets his stomach We think.
IS THIS NORMAL? What do we do?
Head of ID (infectious disease) came to our home today for Tonys weekly blood draw for his CMX drug study he enrolled in. Normally they do it at the clinic but were now down to every other week, so it was both weird and cool to have her here in our home. We talked a lot about EV68 virus, and Ebola. She's brilliant and very helpful in helping us keep tony safe! U of C took in it's first Potentially Ebola sick patient from Liberia today, so that's scary!!!!
That's all for now, oh Cliff, he had an "en vivo T cell depleted transplant", so he received Campath, which is a tcell depleter that stayed in his system and killed all of Tonys Tcells for transplant and also suppressed donor cells up front. but the donor cells did not get depleted. His CD4 count 3 weeks ago was 110, and CD3 was 140, & his CD4:CD8 ratio was great
If his work is stressful (what work isn't?) it can take a toll. If he can back off some I think it would help. I still don't do well with stress at work, the chemo brain kicks in and I get confused and struggle to even come up with the words or names I am searching for. It is really frustrating and embarrassing.
Tell Tony to try not to get too down, If I can make it, I know he can make it. As always prayers your way and take care of yourself.
DaveJ
So glad that Tony is doing well at day 100! That is such an amazing milestone. Obviously, I know next to nothing as far as answers to some of your questions, as many of those issues still linger in the future for Julian. I am amazed that Tony is still working, especially those hours! It seems like that would be a little taxing to his recovering body, but he probably knows himself best. Julian proves us wrong all the time on what he can and cannot handle. Hopefully, he can start putting some weight back on soon. I wonder if some of the loss is loss of muscle mass if he is unable to work out like he is used to. That is probably not comforting, but at the same time, it could be that once he is able to work out again, he will also be able to put on a little weight. I know that for myself (even though I am not ill in any way), if I stop exercising and just eat well, I actually have lost weight. I run daily (when I am not in the hospital with Julian), but the times that I haven't, I have lost weight. Seems like it would be opposite, but not always. Still praying that things continue to go well for Tony! Take care,
Jacki
Debbie
His immune system did a fantastic job though, fought it off and it created a ton of pus to contain it (which means his whites are working)
I'm so spent, physically and mentally, have another trip Monday back there for blood work before DLi (was delayed Bc infection and elevated liver enzymes last week. Hoping it's just the pain meds causing the spike. He's also in a very high dose of voriconizole 350 mg 2x day bc his body metabolizes it quickly, I'm starting to think this is causing his fatigue and muscle cramps, going to ask if levels can be re tested at this weeks labs & maybe adjusted.
Just can't catch my breath
Thx for checking in on us everyone.
Praying tomorrow s labs are great so Tony can proceed with dli. I am so glad to hear his immune system is working well.
Blessings
Julie